Story
about Janet
She was 46, a wife and a mother. But with that doctor's
office visit, the university professor became one
more member of an aging nation forced to wrestle in
words with her own mortality.

There
is no way around the reality of death and dying. But
Americans are learning that end-of-life conversations
can be a pathway leading them to a better way of dying.
The end of life, say experts, need not be all angst
and agony, but a time of surprising personal growth.

About
the Author:

Dale
G. Larson, Ph.D. is Associate Professor, Department
of Counseling Psychology at Santa Clara University.
A clinician and former Fulbright Scholar, Dr. Larson
has published extensively in the end-of-life, counseling,
and health psychology areas. He is the author of
The Helper's Journey: Working With People Facing Grief,
Loss, and Life-Threatening Illness.

Readings:

It’s
time to talk: Most important conversations are the hardest
to have

By Dale G.
Larson

It was a conversation Janet Fossett
never expected or wanted to have: The doctor was alarmed.
The cancer in her breast had reached an advanced stage.
And it was spreading.
She was 46, a wife and a mother.
But with that doctor’s office visit, became one more
member of an aging nation forced to wrestle in words with
her own mortality.
As Janet was about to learn, even
though these conversations can be grueling in their candor,
advocates say they can also bring dignity to dying and a
precious sense of control. But while Americans say they
want quality at the end of life, they avoid the discussions
that make dying well possible.
“I was very scared,”
said Janet, recalling the day in April 2000 when she was
diagnosed with stage III breast cancer. By the time her
doctors detected it, the cancer had spread to her lymph
nodes.
“I was scared of what test
results would show, scared of having drugs injected into
my veins, scared of major surgery, scared that I would soon
die,” she said.
Perhaps most of all, Janet was
scared of talking about it. She’s not alone. Most
Americans dread these conversations. Physicians avoid them.
Patients are reluctant to ask the very questions that would
help them plan for what lies ahead. Relatives try to “stay
positive” or have no idea what to say.
Janet quickly found herself the
center in this conspiracy of silence.
“My fears made it hard to
function,” she said. “I had to push myself to
do what I knew I had to do: learn about my illness, find
good doctors, undergo tests to determine how far the cancer
had spread.”
Through conversation, Janet found
a path through her fears: She understood her illness. Her
doctors helped hammer out treatment options. As she later
realized, Janet had taken the first steps on what she would
call her “breast cancer journey.”

In physicians’ offices, living rooms and community
meetings across the country, people are learning how to
break the silence. As America’s burgeoning baby-boomer
generation will soon find out, it’s a three-step process:
When they’re well, they can
draw up so-called “advance directives,” a formalized
game plan for end-of-life medical care, including a living
will and a durable-power-of-attorney form.
When serious illness strikes, a
double set of conversations can kick in: one with health
professionals to address not just the medical but the emotional
and social needs of the patient. The other is with loved
ones, whose support can make even the roughest end-of-life
journey manageable.
Finally, when death draws near,
conversation ascends to an almost spiritual state. By sharing
the realities of dying, fear and denial can be replaced
by intimacy and growth, a passage through the ultimate window
of opportunity.
“Having direct talk, even
about threatening issues like dying and death, can be reassuring,”
said Dr. David Spiegel, director of Stanford’s Psychosocial
Treatment Laboratory. “It makes people feel connected,
rather than isolated. So an intimate conversation about
death can soften the terror.”
Studies back that up. One survey
by Dr. William Tierney of Indiana University found that
patients came away happier from doctor visits where advance
directives were discussed. Further down the road, conversation
becomes even more crucial. It is here that perhaps the most
crucial discussion takes place — how to move from
cure to care, from the so-called “curative”
stage of treatment to the “palliative,” or comfort,
stage where hospice help could eventually be considered.
The drive to get people talking,
though, can be complicated by cultural considerations.
Each culture has its own set of
rituals and taboos concerning death, and each varies in
the extent to which its members can discuss death openly.
But in the end, the decision always comes down to the individual.
And “it’s your values
that are most important in deciding if a treatment is right
for you,” says Dr. Laura Esserman, director of the
University of California San Francisco’s Carole Frank
Breast Cancer Clinic. She advises patients “to remember
the treatments and services are for you, not the physician.”

Talking to her doctors, Janet said, was tough. But the conversation
that followed was agony.
Janet and her husband Jim knew
their son Jeff, 9, would soon pick up on the frantic phone
calls and skyrocketing anxiety in the house. How do you
tell your own child that your life is in jeopardy?
For Janet, the answer began with
a book. Janet and her husband met with a social worker in
Boston who gave them “How To Help Children Through
a Parent’s Serious Illness.” As Jim drove, Janet
read aloud on their way back to New York.
“We learned a lot on that
two-hour drive,” said Janet. “We knew we couldn’t
delay the conversation any longer, that we needed to be
truthful and use the ‘C’ word.”
They got good advice: Keep it simple.
Stress that cancer’s not contagious. Assure Jeff that
he had not, somehow, caused the illness. “Most of
all,” said Janet, “we needed to assure him he
would always be loved and cared for. By the time we got
home, we had a plan.”
Jim and his son shot hoops in the
driveway. Sitting on the front steps, Jim braced himself,
then told his son what the doctors had found.
“You know how Mommy has been
having lots of tests?” asked Jim.
“Well, it turns out Mommy has breast cancer.”
“Really?” said Jeff.
“Yes. But the doctors in
Boston have good ideas about how to treat it. Mom and I
can tell you more about it later.”
Jeff asked a few brief questions.
Then he changed the subject.
Later that evening, Janet drew
Jeff a bath. She was on her knees with sleeves pushed up
to the elbow. As Janet leaned over the tub, Jeff suddenly
asked: “Mommy, are you going to die?”
Janet closed her eyes and took
a deep breath.
“Actually,” she began,
“I really don’t know. I’ve got great doctors
and they’re going to help us figure out how to treat
my cancer. I sure hope I don’t die. And I want you
to join me and Daddy in hoping for this, too.”
It was the talk she dreaded,
“the most frightening conversation of my entire life,”
she called it. And even then, it didn’t include all
the upsetting details — her treatment plan included
chemotherapy, a mastectomy, radiation and hormonal therapy.
But as dreadful as the conversation had seemed beforehand,
it was over and done with in a heartbeat.
“I worried whether we’d
fumbled these initial conversations,” she said later.
“But we were sure that talking about this stuff with
our son was better than not talking about it.”
But it was just the first of many
conversations to come, conversations that continue today,
17 months after her cancer was diagnosed, as Janet struggles
to live the fullest life possible in a lifetime still impossible
to measure.
Said Janet: “If I should
develop stage IV cancer, which is so often eventually fatal,
then I guess we’ll find ways to talk about that as
well.”

There is no way around the reality of death and dying. But
Americans are learning that end-of-life conversations can
be a pathway leading them to a better way of dying. The
end of life, say experts, need not be all angst and agony,
but a time of personal growth.
Americans are clear in surveys
about what they want as they die: Maintain dignity. Be comfortable.
Say good-bye to important people. Make peace with whatever
higher power they choose. What they may not know, though,
is that the healing power of these challenging conversations
is one of life’s greatest gifts. A few words —
words perhaps never before uttered — can lift the
burden of a lifetime of disappointment, of a shameful personal
secret, of an unexpressed love.

In everyday words, it can sound
as simple as this:
I forgive you.
Please forgive me.
Thank you.
I love you.
Good-bye.

Janet Fossett is not ready to say
goodbye to anyone. But if her cancer worsens, as it could
well do, she already has learned the lexicon that will help
her find a way to live with dying.
“I’ve recently begun
writing a little bit about my life, things I’d like
my son to know,” she said. “No matter what may
happen to me, this will be a part of myself that I can always
share with him.”
In her education, Janet has had
some powerful teachers — from authors to webmasters,
social workers to medical specialists, and most of all,
family and friends. Her time facing death has enriched her
life in many ways.
“No one knows what the future
holds,” said Janet. “But this uncertainty is
also a gift that allows us to be hopeful for my future.”
As she moves into it, she takes
with her the greatest lesson of all.
“I learned,” said Janet,
“that I did not have to face these conversations alone.”

Know
your stuff: Research your disease and bring a detailed list
of questions to your doctor (see below). If you need support,
bring along a friend or family member. Ask to tape record the
medical interview so you can remember all the details of the
conversation.

Build
teams: When you talk to your doctor, nurses, social workers,
clergy, and other care-providers, think of them as colleagues,
all interested in the same thing: helping you live your life
to the fullest in the time you have left.

Learn
from others: Call up a local hospice or hospital to find nearby
support groups or educational programs for people facing the
same medical or caregiving challenges.

Share
experiences: Get your group, say church or senior center, to
discuss the experiences (good and bad) that members have had
with friends and family who have died recently.

Don't
waste time: Share with your loved ones what you'd like to do
with the remaining time in your life--travel, getting together
with old friends, for example. Be realistic, but set down your
plans in detail and take action.

Tie
up loose ends: Think about what the unresolved issues are for
you with your family, and what you can do to achieve some closure.
For example, tell someone you forgive him or her for a past
conflict. Get closure for the unfinished parts of your life.

Tell
your story: Make a video or audiotape for your children or grandchildren,
telling them stories of your life and candidly sharing your
feelings for them.

Write
it down: Think of writing as a conversation with yourself. Writing
about your life in its final stages may not cure your illness,
but finding words to describe what you're feeling can be emotionally
comforting and help you find meaning.

Look
for the window of opportunity: If your illness worsens and you
are trying to balance life-prolonging treatments with your quality
of life, it might be time for you to consider dying as the next
stage of your life. The more you talk with others and prepare,
the more likely you will be able to maintain control and dignity
and achieve a sense of peacefulness in the time that remains.

Discussion
Questions:

The article describes three different points in time--when
we are well, when serious illness strikes, and when death draws
near--and the different kinds of conversations that can be beneficial
at those times. Discuss these and other end-of-life conversations
that can be helpful and healing, and in what time periods these
might take place.

What are some of the barriers to end-of-life conversations
in modern medical care? Discuss barriers that might exist in
physicians (e.g., fear of depressing the patient), in the health
care system (e.g., lack of time allocated for health providers
to actually talk to patients), and in patients and family members
(e.g., fear of being overwhelmed or making things worse) that
contribute to this conspiracy of silence.

Discuss Janet and her husband's decision to discuss her medical
situation with their son. What are some of the concerns--valid
or not-- that might keep parents from sharing this information
with their children? What are the pros and cons of disclosing
information about a personal serious illness with friends and
coworkers? Finally, what are some of the unique kinds of support
that might be obtained by attending a support group for people
with a similar health problem?

What might you do now to make sure that these kinds of conversations
occur if you or a loved one develops a life-threatening condition?
Have you taken any preliminary steps to complete advance directives,
to develop good relationships with your physician and other
health care providers, and to address unfinished business in
your relationships and incomplete life tasks and goals? What
might be some steps you can take in those directions at this
time?

Points and Observations:

Janet
is extremely involved and informed concerning all aspects of her medical
treatment. We know that some people prefer to approach these situations
in this way, while others prefer to be a bit less involved and
to exert less control over their medical care, turning much of the control
and decision making over to their physicians and other health providers.
Which style describes you best? What are the advantages, and possible
disadvantages, of this style?

Janet
and her husband Jim found a way to tell their son Jeff about Janet's
condition that was not overwhelming for him and that opened the door
to future conversations. It is usually not a question of whether
to talk about these difficult topics with one's children, but
rather how and when to do so. What did you think and feel while
reading about the conversations Jim and Janet had with Jeff
in the driveway and in the bathroom? What did you learn from these
very poignant conversations and Janet's reflections on them?

References
and Resources:

Albom,
N. (1997). Tuesdays with Morrie: An old man, a young man,
and the last great lesson.
New York: Doubleday. In this bestseller, Mitch Albom describes
conversations with his former professor Morrie Schwarz as Morrie navigates
the dying process. This is probably one of the most inspiring
statements of the gifts that conversations at the end of life can
afford to the dying, their family, and friends.

Byock,
I. (1997). Dying well: The prospect for growth
at the end of life.
New York: Riverhead Books. This book tells the stories
of dying patients and their families who in the face of tragedy and
conflict are able to achieve reconciliation, love, and meaning at
the end of life. These people provide great models for
how to deal with doctors and how to talk to friends and relatives.

Doka,
K. J. (1993). Living with life-threatening illness:
A guide for patients, their families, and caregivers. New
York: Lexington Books. This book identifies the
tasks of living with dying and offers practical suggestions for patients,
families, and caregivers to assist them to meet the challenges of
life-threatening illness.

Larson,
D. G., & Tobin, D. R. (2000). End-of-life conversations:
Evolving practice and theory.Journal of the
American Medical Association,
284, 1573-1578.
Written for health professionals, this article examines the evolution
and need for end-of-life conversations. Barriers to end-of-life discussions
are identified and strategies for enhancing them are suggested, including
specific communication skills for physicians.

Lo,
B., Quill, T., & Tulsky, J. (1999). Discussing palliative
care with patients. Annals of Internal Medicine,
130 (9),
744-749. Written for physicians and other health professionals,
this article offers practical suggestions for sensitively implementing
end-of-life conversations , including how to discuss palliative
care issues while disease-remitting treatments are continued without
creating a perception of abandonment.

Lynn,
J., & Harrold, J. (1999). Handbook for mortals: Guidance
for people facing serious illness.
New York: Oxford Press. A lay publication, this book offers practical
information and counsel concerning the decisions people face, the
choices available to them, how to talk to your doctor, and how
the health care system operates. Personal stories show how others
have faced their fears and made their choices.

McCue,
K., & Bonn, R. (1996). How to help children through a
parent's serious illness.
New York: St. Martin's Press. Offers practical advice
for parents facing serious illness concerning how to help children
age 3 -19 cope with their pain and fears (e.g., such as those relating
to being the cause of a disease, to contagiousness, to the loss of
a parent's daily support, and to death) and move toward a healthy
future, regardless of the outcome of the parent's illness

McNees, P. (Ed.). (1998). Dying: A book of comfort. New York: Warner Books. This fine anthology
gathers passages from more than forty thinkers, writers, and religious
figures from different faiths. These life-affirming passages offer
profound insights into the emotions surrounding death and give voice
to many of the feelings dying and grieving people have. This book
can help people begin to find the words that exactly capture what
they are going through.

Tobin, D. R. (1999). Peaceful dying: The step-by-step guide to
preserving your dignity, your choice, and your inner peace at the
end of life. Cambridge, Mass: Perseus. Presents a 26-step
program to return control and peace to those entering this stage of
life and to help all involved–the dying, their families, and healthcare
providers. Offers many examples of conversations that can assist patients
and their families to address practical concerns and to achieve peace
and dignity at the end of life.

Vitez, M. (1998). Final choices: Seeking the good death. Philadelphia: Camino Books. This Pulitzer Prize-winning
book examines the kinds of choices people face as they seek to retain
control and to achieve a high quality of life at the end of life.
McNees,
P. (Ed.). (1998). Dying: A book of comfort.
New York: Warner Books. This fine anthology gathers passages
from more than forty thinkers, writers, and religious figures from
different faiths. These life-affirming passages offer
profound insights into the emotions surrounding death and give voice
to many of the feelings dying and grieving people have. This book
can help people begin to find the words that exactly capture what
they are going through.

Links:

Aging
with Dignity
The Five Wishes Project
Offers advance directive forms that can be used by residents of
33 states.
1-888-5-WISHES www.agingwithdignity.org